Surviving Severe Mental Illness in the US and Indonesia

This summary is by science writer Karen A. Frenkel. Karen will be contributing a blogpost about her forthcoming interview with neuroscientist Martha Farah of the University of Pennsylvania on Dr. Farah’s new edited volume Neuroethics: An Introduction with Readings (MIT, 2010), which includes contributions by Steven Hyman, Eric Kandel, and Peter Kramer.

The 4th interdisciplinary conference on brain, mind, and culture sponsored by FPR and UCLA conference featured a panel devoted specifically to schizophrenia. Elyn Saks, Associate Dean and Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Gould Law School, spoke about her experience living with schizophrenia and her treatment, which combined medication and psychodynamic therapy. She has documented her journey in her book The Center Cannot Hold: My Journey Through Madness (Hyperion Books, 2007). Kay Redfield Jamison, Professor of Psychiatry at the Johns Hopkins University School of Medicine and Honorary Professor of English at the University of St Andrew commented briefly about her experience with bipolar disorder. Also an author, she wrote An Unquiet Mind: A Memoir of Moods and Madness (Vintage, 1997), which details her experience with the ebbs and flows of severe mania and depression.

During the discussion that followed, Dr. Eric Kandel, Nobel Laureate and Professor of Biochemistry and Biophysics at Columbia University College of Physicians and Surgeons, remarked on the similarity of Saks’ and Jamison’s experiences. He said that psychotherapy for severe mental illness is surprising because it is now downplayed, and that psychoanalysis for schizophrenia is “practically unheard of.” He commented, “Obviously it’s a combination of things that is important.”

Saks acknowledged that some experts espouse neither psychodynamic nor psychoanalytic therapy for schizophrenia, but said, “I’m here to tell you that it is (effective) for some people.” Stress is bad for all illness, in particular mental illness, she said, and it is important to understand triggers and learn to cope with or avoid them.

Refusing medication is resistance that arises from the narcissistic injury of having that illness, she said, and working through those feelings of “damage and defectiveness is really important” for recovery. For her, a safe place to bring frightening thoughts (and, as a result, not express them in the workplace) was very valuable. “Interpretations can detoxify symptoms, but not always,” she elaborated. Some believe psychotic symptoms are just random firings of neurons and others think they’re meaningful, Saks acknowledged, but when the person is experiencing them interpretations do not always help.

Having someone accept you not only for the good, the bad, and the ugly is “enormously empowering,” she said. Schizophrenics are people, too, she said, “we have relationship issues and work issues that can be addressed through psychotherapy.” Therapy improves quality of life, she said, “so on lots of different vectors it could be a very helpful compliment to medication.” Although early studies did not involve medication, Saks suggested that future studies explore the efficacy of both psychotropic medication and good, intensive therapy.

Kandel then noted that both women are highly intelligent, which is a sign of ego strength, and asked them to elaborate on their experiences. Jamison responded that intelligence is not always an advantage. Some literature suggests that early on the highly intelligent commit suicide because of their keen awareness of their unraveling and its implications for their future. She also emphasized that refusing medication is a psychological issue, but has enormous medical implications and the patient’s relationship with his or her doctor is “hugely important.” For Saks, working, thinking, and writing are important. “Whatever intelligence I have has helped me navigate having this illness,” she said.

A member of the audience thanked Saks and Jamison for their courage. He then inquired about the tension between recognizing a biological process that might mediate aspects of disorder with the contrasting notion that willpower can overcome that discomfort. Saks responded, “I don’t believe this has anything to do with willpower. Mine is not the story of willpower, but of one who had enormous treatment resources–great psychopharmacology, a supportive family and friends. It’s not will power, it’s help.”

Robert Lemelson, UCLA anthropologist and documentary filmmaker, added that in Indonesia there is one psychoanalyst for 200 million people who mostly treats foreigners. Pak Kereta (the main character in Lemelson’s documentary, Shadows and Illuminations, which is one of a three-part series) has schizophrenia, according to some models. But only during the last cut did Lemelson begin to view Kereta as having “something like schizophrenia.” His outcome, by most measures, is quite good, Lemelson said, because he is married, has children, and works, despite horrific experiences and major stressors in his life and without the kind of western biomedical interventions being discussed. “One of the points we make in the film is that he’s not labeled . . . we show that people, while they consider it odd, don’t consider it insanity, or madness, or mental illness, so he’s protected by the lack of a biomedical label.”

In another film in Lemelson’s series (Afflictions: Culture and Mental Illness in Indonesia), a woman with Tourrette’s Syndrome also escapes labeling, but those in her midst do see her as mad and she has a very poor outcome because her social world is quite toxic. Some of the factors Lemelson mentioned that effect positive and negative outcomes in rural Indonesia include: labeling and social stigma (or lack thereof), supportive family environments, environmental toxins, and the lack of drug abuse. “So several factors, none of which is specifically psychiatric or biomedical, shape outcomes of severe mental illness,” he concluded.

Finally, Marvin Karno, Professor Emeritus, of the Department of Psychiatry and Biobehavioral Sciences at UCLA, emphasized the importance of “a strong sense of tenacity, resilience under incredible stress,” traits that are “not ordinary,” as very important to positive outcomes. Having worked for many years with persons with schizophrenia and bipolar disorder, he has observed that those with good outcomes possess such traits. “They’re essential to fighting any terrible disease,” he said. He described a five-year survivor of pancreatic cancer who was also a triathelete. “She was just determined that that cancer wasn’t going to kill her and it didn’t.”  He suggested that the trait of resilience ought to be further explored.